Access to Information About Donor Conception – Australia

State and Territory Laws

Victoria               Western Australia                New South Wales                South Australia                NT, QLD, Tas & ACT

Victoria

Donor Treatment Registers

The Victorian Assisted Reproductive Treatment Authority manages the donor conception registers (central and voluntary) pursuant to the Assisted Reproductive Treatment Act 2008 (ART Act). The registers record information about:

  • the donor/s
  • the woman who underwent treatment using donated gametes (i.e. egg or sperm) or a donated embryo, and her partner (if any)
  • the donor conceived person.

Information held on the registers may include details such as full name, date of birth and medical history.

The Central Register

The following persons are eligible to apply for access to information held in the central register:

1)   Donor-Conceived People

In Victoria, all donor-conceived people may access information about their donor regardless of when they were conceived. However, contact may be limited by either party via the lodgement of a contact veto/preference statement. These laws came into effect in March 2017. (For background see further our blogs on donor conception and access to information from February 2015 and  July 2015.)

2)  Parent of a donor-conceived person

  • The parent of a donor-conceived person may obtain non-identifying information about the donor/s when their child is under the age of 18. They may also obtain identifying information if the donor/s has consented. A contact veto/preference statement may be lodged by the respective parties in relation to the donor, donor-conceived person under the age of 18, or any children of the donor aged under 18.
 3)  Donor of Gametes or Embryo(s)
  • Donors are entitled to apply to the Central Register to seek non-identifying information about their donor offspring. They may also apply for identifying information but this can only be released with the consent of the donor-conceived person or parents of those under 18 years of age. The donor-conceived person or parents of those under 18 years of age are also given the opportunity to lodge a contact veto or preference which specifies whether and if so how they would like contact to occur (if any).
 To apply for information from the Central Register a person must submit an application form and pay an application fee of $74.45.

The Voluntary Register

A voluntary register also exists to enable information exchange by people not governed by the legislation.

The following people may lodge information and apply for access to information held on the Voluntary Register:

  • a donor conceived person (for example for whom no records exist, or searching for siblings);
  • a parent of a donor-conceived person;
  • a relative of a donor-conceived person;
  • a descendant of a donor-conceived person;
  • a donor;
  • a relative of a donor.

If there is a ‘match’, information that the person has agreed to release will be given to the other person. For example, if both the donor-conceived person and the donor place their name on the voluntary register, they may be matched, and the information they have agreed to release will be shared.

People wishing to register on the voluntary register must fill in an application form. There is no fee for this service.

Notification of Donor Conceived Status

Donor conceived people cannot make choices about whether or not they wish to seek further information, if they do not know that they are donor conceived.

To acknowledge that people have the right to know, and then choose for themselves what they wish to do, the laws changed in Victoria in 2010 to require an addendum to the birth certificate of a donor conceived person. 1 This means that on applying for a birth certificate at age 18, a donor-conceived person will be told there is more information about them held on the register.

The system is meant to encourage parents to disclose and discuss their child’s donor-conceived status early.

The Victorian Assisted Reproductive Treatment Authority (VARTA) has, since the passing of such laws, run a ‘Time to Tell’ Seminar aimed at encouraging and supporting parents to share information about the method of conception and the donor with their children.

Links to support groups for donor conceived people, their families, and donors, may also be found on the Health Law Central donor conception front page.

Western Australia

Western Australia
In Western Australia information about people connected to donor conception must be provided by fertility clinics to the Department of Health, where the information is recorded in a secure computer database called the Reproductive Technology Registers. Access to certain information depends upon when a person was conceived.

Read more below.

The Reproductive Technology Register

In Western Australia, a register of information is held at the Department of Health about

  • the identity of participants in an artificial fertilisation procedure;
  • the outcome of procedures, showing the genetic origin of the human gametes, human egg undergoing fertilisation or human embryo used;
  • the identity of children born as a result of an artificial fertilisation procedure, including the identity of each biological parent; and relevant demographic and clinical information. 2

People conceived using gametes donated after 2004 may access identifying information when they turn 16 about their donor. 3

Donors may also access non-identifying information about any children born, and identifying information with consent 4 (the child may only consent after he/she turns 16, although parents may consent on his/her behalf earlier). 5 Counselling is a requirement for all people wishing to access information.

People conceived prior to 2004 may access non-identifying information that is held on the register—noting that information has only been held in the central register since 1993.

People who were conceived prior to 1993 must approach the clinic involved in their conception and access to information will depend on clinic’s record keeping and policies. However, the Human Reproductive Technology Act 1991 (WA) also provides that licensees must facilitate any such access requested. 6 They may also place their details on the voluntary register.

The Voluntary Register

A voluntary register also exists to facilitate the exchange of identifying information for those not able to access identifying information about offspring, donors or siblings.

It is available to donor offspring over the age of 18 who wish to find out about their genetic origins, donors who want to know if a child has been born as a result of their donations, and parents of donor conceived offspring under the age of 18.

Information is entered on the Voluntary Register if a person completes a properly signed and witnessed written registration form that can be obtained from the Registrar, Voluntary Register.

Access is based on the mutual consent between donors and donor-conceived individuals. Related donor-conceived offspring may also have access to identifying information about each other if they have all consented. This may be done without identifying the donor.

Once a ‘match’ is made, relevant non-identifying information is given to the registrant.

Identifying information about a person will only be released from the Register with the written consent of that person.

Registrants may also state their wishes about contact when joining the Register. If they do not want to be contacted by another party, they can make this known in writing.

Note: although the WA voluntary register may include details of people involved in donation since around the early 1970s when ART started in Western Australia, central records have only been officially stored since April 1993. (This is because the Human Reproductive Technology Act 1991 came into operation, on 8 April 1993 and central record keeping only happened thereafter). Records from before 1993 are generally held by the fertility clinics and medical practitioners that provided such services. However, the WA Registry recognises detailed records were not always kept in the early days of ART and that it may be very difficult to match records for donors and donor offspring for donations made before the early 1980s.

Links to support groups for donor conceived people, their families, and donors may also be found on the Health Law Central donor conception front page.

NSW

New South Wales
NSW has, since 2010, operated a central register under the he Assisted Reproductive Technology Act 2007 (NSW). The Act prohibits anonymous donation, and requires providers to place information about people conceived after 1 January 2010 on the register. People who were conceived prior to the operation of the Act can also voluntarily submit information.

Read more below.

The Central Register

The Central Register contains mandatory information that providers must submit to the NSW Ministry of Health for inclusion on the register.

Mandatory information includes information regarding every child born as a result of ART treatment using donated sperm, eggs or embryos, or born through surrogacy, and whose conception occurred after 1 January 2010. It includes:

  • the full name, sex and date of birth of the child born as a result of ART treatment by the ART provider
  • the name of the woman who gave birth to the child
  • the full name and date and place of birth of the gamete donor.

The ART provider must also provide identifying information about the donors who donate sperm, eggs or embryos. Donors must provide the following Mandatory Information to ART providers for inclusion on the Central Register

  • full name, residential address, date and place of birth
  • Ethnicity and physical characteristics
  • Any medical history or genetic test results of the donor or the donor’s family that are relevant to the future health of:
    • a person undergoing ART treatment involving the use of the donated sperm, eggs or embryo, or
    • any offspring born as a result of that treatment, or
    • any descendent of any such offspring,
  • sex and year of birth of other offspring arising from the donation
  • name of each ART provider who has previously obtained donated sperm, eggs or embryo from the donor and the date on which the sperm, eggs or embryos were obtained.

ART providers must also collect non-identifying information (year of birth and sex) from donors about any offspring they have who have not been born as a result of ART treatment. Such information is also entered on the register, however it is only with that offspring’s consent that identifying information about him or her be shared.

Access by donor conceived people
Donor conceived people must be over 18 yeas of age to register or apply for information on the Central Register. It will therefore be 2028 before those who were donor conceived after 1 January 2010, can apply for information about their donor, or other offspring of their donor.

Access by parents of donor conceived people
Parents of children conceived after 1 January 2010 as a result of ART treatment using donated gametes can apply to the Central Register for non-identifying information about their child’s sperm, egg or embryo donor.

Identifying information can only be provided to the parent in the event of a medical emergency or life threatening situation, and must be reasonably necessary to save the life of the child or to prevent serious damage to the child’s physical or psychological health.

Access by Donors
When sperm, egg or embryo donation resulted in offspring conceived after 1 January 2010, mandatory non-identifying information held by the NSW Ministry of Health on the Central Register can be provided to the donor. The law currently provides that the information that will be shared includes the sex and year of birth of each offspring.

Counselling
There is no legislative requirement for people wishing to apply for information to undergo counselling however, the NSW Department of Health ‘strongly recommends’ people seek counselling before applying for information held on the register.

Those seeking information must apply by completing an application form on the Department of Health website.

Voluntary placement of information on the Central Register

People who were donor conceived before 1 January 2010 can register any of the above information about themselves on the Central Register.

Donors who donated sperm, eggs or embryos before 1 January 2010 can also register their details.

When the donor and donor-conceived person have both given their express consent to do so, information about each other can be exchanged.

Further information on the register and answers to frequently asked questions regarding donors, parents and donor-conceived people may have may be found on the NSW Department of Health Website – http://www.health.nsw.gov.au/art/

Other links to donor conception support services and groups can be found on the Health Law Central donor conception front page.

South Australia

South Australia

South Australia also has legislation governing assisted reproduction. It does not have a central register for information about donor conception. However, clinics are legally required to follow the NHMRC Guidelines which provide for information release and proactive engagement by ART providers.

Read more below.

South Australian legislation requires clinics to maintain records about assisted reproductive treatments. Information is kept and can include things such as a donor’s height, weight and build, skin colour, interests, occupation, and medical and family background.

Currently in South Australia donor-conceived people may access information about their donor, with their donor’s consent.

Although at present South Australia does not operate a central register, changes to the Assisted Reproductive Treatment Act 1988 (SA) in 2010 include that the Minister may keep a register of donors of human reproductive material used in assisted reproductive treatment and resulting in the birth of a child. The law provides the register must contain, in relation to each donor on the register—

(a) the donor’s full name and nominated contact address; and

(b) the full name and nominated contact address of the person to whom assisted reproductive treatment using the donor’s human reproductive material was provided; and

(c) the full name of any child born as a consequence of such assisted reproductive treatment (if known); and

(d) any other information required by the regulations, and other information that the Minister thinks fit. 7

However, the use of the word ‘may’ means that such a register is not compulsory. To date, there is no central register that holds this information although there has been some expression that it will occur.

A review of the Assisted Reproductive Treatment Act 1988 (SA) conducted in 2017 recommended that such a register be established ‘as a matter of priority’.

NT QLD ACT Tas

NT, Queensland, ACT and Tasmania

States and Territories that do not have specific legislation governing ART or the release of information to parties connected with donor conception are obliged to follow the NHMRC Guidelines for accreditation purposes. The Guidelines emphasise the right of donor conceived people are entitled to information about their genetic heritage. They also provide for information release and proactive engagement by ART providers.

Read more below.

The Northern Territory, Queensland, Australian Capital Territory and Tasmania do not have legislation governing assisted reproduction or the release of information to people connected with donor conception. They are however guided by the NHMRC Guidelines, which must be followed for accreditation purposes. (See Health Law Central page on ART Clinics Oversight).

The NHMRC Guidelines are discussed above.

Note: people in the Northern Territory, Queensland, ACT and Tasmania may all also contact the numerous groups and support services available (and listed on the Health Law Central Donor Conception page).

National Guidelines

The NHMRC Ethical Guidelines on the use of ART in clinical practice and research require
** information release,
** non-anonymous donation,
** clinics to take an active role in encouraging disclosure.
The NHMRC Ethical Guidelines, 8 guide clinical practice in all states and territories. They are given legislative effect in South Australia.

The NHMRC Guidelines have, since 2005, recognised that:

Regarding Offspring

  • Persons conceived using ART procedures are entitled to know their genetic parents.
  • Clinics must not use donated gametes in reproductive procedures unless the donor has consented to the release of identifying information about himself or herself to the persons conceived using his or her gametes.
  • Clinics must not mix gametes in a way that confuses the genetic parentage of the persons who are born.

Regarding Donors

  • Clinics should help potential gamete donors to understand and accept the significance of the biological connection that they have with the persons conceived using their gametes.
  • Donors should be advised that the persons conceived are entitled to knowledge of their genetic parents and siblings.

Regarding Recipients

  • Clinics should help prospective recipients to understand the significant biological connection that their children have with the gamete donor.
  • Recipients should be advised that their children are entitled to knowledge of their genetic parents and siblings; they should therefore be encouraged to tell their children about their origins.

Regarding other clinical obligations

Clinics should work with relevant professional organisations, and should use forums for public information to encourage people who were donors before the introduction of these guidelines, and those previously conceived using donated gametes, to contact the clinic and register their consent to being contacted by their genetic children or genetic siblings and half-siblings, respectively.
While the guidelines do not have the same legal force as legislation, ART Clinics must follow them for accreditation purposes across the country. However, lack of certainty, consistency, and guarantees for access to information in states and territories without legislation, or where legislation only gives certain people access rights, has led to the call for legislative provisions mandating information release for all. A number of recent inquiries at National and State level have been conducted on this matter, 9 and suggestions for change have been made.

It is likely that laws will continue to change to support the release and exchange of information. For now, it is important to be aware of the NHMRC Guidelines, and the laws and practices in your state.

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Notes:

  1. Assisted Reproductive Treatment Act 2008 (Vic) ) s 153; Births, Deaths and Marriages Registration Act 1996 (Vic) s 17B(2).
  2. Human Reproductive Technology Act 1991 (WA), s 45.
  3. Human Reproductive Technology Act 1991 (WA), ss 49(1a), 49(2d) and 49(2e).
  4. Human Reproductive Technology Act 1991 (WA), s 46).
  5. Human Reproductive Technology Act 1991 (WA), s 49(2a), 49(2c)).
  6. Human Reproductive Technology Act 1991 (WA), s 46(1).
  7. Assisted Reproductive Treatment Act 1988 (SA), s 15(2).
  8. National Health and Medical Research Council, Ethical Guidelines on the Use of Assisted Reproductive in Clinical Practice and Research (2017).
  9. See for example, Sonia Alla, Report on the Review of the Assisted Reproductive Treatment Act 1988 (SA), 2017; New South Wales Law and Safety Committee Managing Information Related to Donor Conception (Inquiry) (2012); New South Wales Law and Safety Committee inquiry into the inclusion of donor details on the register of births (2011); Victorian Parliament Law Reform Committee Inquiry into Donor Conceived Individuals Access to Information about Donors (2011); Senate Committee Inquiry into Donor Conception, Access to Genetic Information and Donor Identification (2010).